Friday, March 12, 2010

looking forward to a weekend away from the hspital

Good Friday Morning!! I hope this finds all of you doing well. I am doing GREAT here in Sunny Phoenix. It is hard to believe that just a week ago I was taken back to surgery for some leak repair. It has been a week of numerous improvements but no set backs for me this week. We are still not discussing the coming home part.

I still am having problem with shacking/tremors from some of the anti rejection drugs I am on. My blood tests look really good (0r so the DR. Says),. The doc even committed on the fact that my new liver functions were perfect. I AM SO BLESSED!!!

Roy is not having such a good time of it. He is not seeing improvement in his liver functions and as of yesterday his bilirubin was 8.9 that is bout 8.4 to high. The doctor ordered some more test but is fairly confident that it is just a mater of time before the reduced portion of liver regenerates and takes charge again.

RaeAnn made it back to ISU and is spending the Weekend with the symphonic band in Reno preforming at a university music directors conference.

The boys seam to be doing good with the Rockwoods. Thanks Ann, Doug and Scott for helping them out at this time.

Ashlee seams to be plugging away with those things most important to her. Thank You also Dave and Gwen for all you do to keep this family functioning.

There are so many others out there touching our lives in so many different ways.

I have an appointment with a diabetic specialist to check and see what these drugs are doing to me. After that We have no appointments until Tuesday. We are looking forward to several days in a row without a Mayo Clinic visit.

We are excited for our dear friends Joe and Stacy Bice to come and visit us this weekend.

I was telling Beth yesterday that is hard to think of my self in the "Post Transplant" roll. My thinking is not catching up with the reality of the situation.

Thanks again for all your support through this. Fill free to call write, email or stop by for a visit. take care Love the Longs!
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1 comment:

Merodene said...

Great to hear from you!! We're praying for the Mayo visits to lessen too. Hugs to all of you!!!

March 12, 2010 at 9:01 AM

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FAQ'S

I have struggled with how to write this so I figured I would start out with the frequently asked questions (FAQ's)

Q1: What is wrong with you?

A: I have a liver disease called Primary-Sclerosing-Cholangitis (a.k.a. PSC). I am currently in end stage liver failure.
.http://www.mayoclinic.org/primary-sclerosing-cholangitis/
http://www.gicare.com/pated/ecdlv35.htm


Q2: Does that mean you are going to die soon?

A: No, I will explain more latter.


Q3: What dose it do to you?

A: The biggest symptom is chronic fatigue. confusion, jaundice, ascides, sever itching, difficulty sleeping, some pain.


Q4: How did you get this?

A: I am not sure, I just know that in 1996 (because of other health issues) the Dr. did blood work and said my liver enzymes are way up and referred me to a Specialist in St. George. They did a Biopsy on the liver and found it be stage II Fibroses. They did not have a name for it at the time and said watch it for about five years then come back and we will see what the progress is.
In 2001 I returned to the GI (Gastroenterologist) specialist and they once again did a Biopsy. Comparing the results, they were quite concerned and wanted to run a few more test. That is when they positively diagnosed it as PSC. At this point they gave me medicines and said go back to work, get plenty of sleep and you should be fine for a while.
In 2005 we moved to Idaho Falls; during part of my physical with the new doctor he noticed the elevated liver enzymes and referred me to a local GI Clinic. I had been noticing a significant lack in stamina and seamed to be sick a lot. They reviewed my case and thought it prudent to send us to Salt Lake City to get to know the Transplant team down there.
Beth and I spent three days of testing at LDS hospital and meeting with the transplant specialist.
At this visit we learned what to expect and all kinds of new terms like MELD
http://www.mayoclinic.org/meld/mayomodel6.html
This number needs to a 15 before you can get a liver. My meld then was 9-10. They told me they were worried that I would develop liver cancer because of how long I had PSC. They ordered CT scans of the liver every 6 month’s and other wonderful tests regularly.
I have continued to go down hill since then. My stamina has dropped. I have swelled and am having to take medication because of fluid retention. I have developed sever itching. I am yellow (Jaundice) sometimes more than others.
After our last visit Friday the Meld Number is 12 and the DR. is going to go a head and put me on the list.


Q5: What’s next?

A: We are still in a waiting game. I need to get worse and then the right circumstances need to be met to have a liver available for me.


Q6: Why make you wait.

A: The longer my own liver will function the better off I am; because there are no guarantees that a liver will come available for me that matches.


Q7: What are you doing about work?

A: Well I am no longer patrolling. I am on light duty and my supervisors have been great. They allow me to do as much as I can administratively so I am still working about 20 hours a week. The other 20 hours a week is being covered by sick leave and annual leave so I still am getting a pay check.


Q8: What happens when all your leave runs out?

A: The Federal government has a leave share program and I have had many people ask about donating leave to me. So when my leave dose run out I am counting on the charity of my fellow workers to help me get through this.


Q9: What is the recovery time for liver transplant?

A: All the people that I have talked with that have had transplant surgery tell me that they wake up from the surgery felling better immediately. I will have to stay in SLC for 6 weeks after the surgery to get the anti-rejection drugs adjusted just right then should be able to go home and return to work. Within 9 weeks I should fell 100%. Then it is a matter of building up my muscles and stamina again. There should be no restrictions placed on me after that.


Q10: How can I help?

A: At this point in the processes there is really nothing you can do but pray. When I receive my transplant we will be depending on family and friends to help take care of the kids and keep life going but other than that there is really nothing that can be done.
Thanks. Jeff

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